Using self-determination theory to understand and improve recruitment for the Coaching for Healthy Ageing (CHAnGE) trial.

BACKGROUND: Intervention trials promoting physical activity among older people frequently report low and unrepresentative recruitment. Better understanding of reasons for participation can help improve recruitment. This study explored why participants enrolled in the Coaching for Healthy Ageing (CHAnGE) trial, including how their decision was influenced by recruitment strategies. CHAnGE was a cluster randomised controlled trial testing the effectiveness of a healthy ageing program targeting inactivity and falls. Seventy-two groups of people aged 60+ were recruited from community organisations via informal presentations by the health coaches. METHODS: We conducted a secondary thematic analysis of interview data from our wider qualitative evaluation in which 32 purposively sampled trial participants took part in semi-structured interviews about their experiences of CHAnGE. Data relating to recruitment and participation were analysed inductively to identify themes, then a coding framework comprising the core constructs from self-determination theory-autonomy, competence and relatedness-was used to explore if and how this theory fit with and helped to explain our data. RESULTS: Recruitment presentations promoted the CHAnGE intervention well in terms of addressing value expectations of structured support, different forms of accountability, credibility, achievability and, for some, a potential to enhance social relationships. Participation was motivated by the desire for improved health and decelerated ageing, altruism and curiosity. These factors related strongly to self-determination concepts of autonomy, competence and relatedness, but the intervention's demonstrated potential to support self-determination needs could be conveyed more effectively. CONCLUSIONS: Findings suggest that recruitment could have greater reach using: 1. Strengths-based messaging focusing on holistic gains, 2. Participant stories that highlight positive experiences, and 3. Peer support and information sharing to leverage altruism and curiosity. These theory-informed improvements will be used to increase participation in future trials, including people in hard-to-recruit groups. They may also inform other physical activity trials and community programs.

What Matters 2 Adults (WM2Adults): Understanding the Foundations of Aboriginal and Torres Strait Islander Wellbeing.

Aboriginal and Torres Strait Islander people experience a greater range of health and social disadvantages compared to other Australians. Wellbeing is a culturally-bound construct, and to date, a national evidence base around the components of wellbeing for Aboriginal and Torres Strait Islander people is lacking. Understanding and measurement of wellbeing for this population is critical in achieving health equity. This paper aims to identify and describe the foundations of wellbeing for Aboriginal and Torres Strait Islander adults. This national qualitative study was underpinned by an Indigenist research approach which privileges the voices of Aboriginal and Torres Strait Islander people. Aboriginal and Torres Strait Islander adults were purposively recruited from around Australia between September 2017 and September 2018 to participate in Yarning Circles, led by Aboriginal and Torres Strait Islander researchers. Yarning Circles were audio recorded, transcribed and analyzed. A Collaborative Yarning Methodology was used, which incorporated reflexive thematic analysis to identify and describe the foundations of wellbeing reported by participants. A total of 359 Aboriginal and Torres Strait Islander adults participated. Our analysis revealed five foundations of wellbeing: belonging and connection; holistic health; purpose and control; dignity and respect; and basic needs. These foundations were deeply interwoven by three interconnected aspects of Aboriginal and Torres Strait Islander life: family, community and culture. The findings of this study will substantially aid our efforts to develop a new wellbeing measure for Aboriginal and Torres Strait Islander adults. The iterative Indigenist methods used in this study provide a robust research methodology for conducting large-scale, nationally-relevant qualitative research with Aboriginal and Torres Strait Islander people. Policies and practices that are informed by our results have the potential to address outcomes that are meaningful for Aboriginal and Torres Strait Islander people.

Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care partners. Empowering patients and their care partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy-makers, applicable to both developed and developing countries.

Stakeholder perspectives on the implementation and impact of Indigenous health interventions: A systematic review of qualitative studies.

BACKGROUND: Evaluations of health interventions for Indigenous peoples rarely report outcomes that reflect participant and community perspectives of their experiences. Inclusion of such data may provide a fuller picture of the impact of health programmes and improve the usefulness of evaluation assessments. AIM: To describe stakeholder perspectives and experiences of the implementation and impact of Indigenous health programmes. METHODS: We conducted a systematic review of qualitative studies evaluating complex health interventions designed for Indigenous communities in high-income countries. We searched 6 electronic databases (through to January 2020): MEDLINE, PreMEDLINE, Embase, PsycINFO, EconLit and CINAHL and hand-searched reference lists of relevant articles. RESULTS: From 28 studies involving 677 stakeholders (mostly clinical staff and participants), six main themes were identified: enabling engagement, regaining control of health, improving social health and belonging, preserving community and culture, cultivating hope for a better life, and threats to long-term programme viability. CONCLUSION: The prominence of social, emotional and spiritual well-being as important aspects of the health journey for participants in this review highlights the need to reframe evaluations of health programmes implemented in Indigenous communities away from assessments that focus on commonly used biomedical measures. Evaluators, in consultation with the community, should consistently assess the capacity of health professionals to meet community needs and expectations throughout the life of the programme. Evaluations that include qualitative data on participant and community-level outcomes can improve decision-makers' understanding of the impact that health programmes have on communities. PATIENT OR PUBLIC CONTRIBUTION: This paper is a review of evaluation studies and did not involve patients or the public.

Parents' and carers' views on factors contributing to the health and wellbeing of urban Aboriginal children.

OBJECTIVE: To identify and describe caregiver perspectives on factors important for the health and wellbeing of urban Aboriginal children. METHODS: Caregivers of Aboriginal children participating in the Study of Environment on Aboriginal Resilience and Child Health (SEARCH) were asked to describe the single most important factor that would help their children to be healthy and well. Responses were analysed using thematic and content analysis. RESULTS: Of the 626 carers in SEARCH, 425 (68%) provided a response. We identified 13 factors related to: loving family relationships, culturally competent healthcare, food security, active living, community services, education, social and emotional connectedness, safety, breaking cycles of disadvantage, housing availability and affordability, positive Aboriginal role models, strong culture, and carer wellbeing. CONCLUSIONS: Aligning with holistic concepts of health, caregivers believe that a broad range of child, family and environmental-level factors are needed to ensure the health and wellbeing of Aboriginal children. Implications for public health: This study highlights the importance of providing public health initiatives that enable equal access to the social determinants of health for carers of Aboriginal children. Affordable and adequate housing, food security, culturally appropriate healthcare, and family and community connectedness remain critical areas for targeted initiatives.

A Coaching Program to Improve Dietary Intake of Patients with CKD: ENTICE-CKD.

BACKGROUND AND OBJECTIVES: The dietary self-management of CKD is challenging. Telehealth interventions may provide an effective delivery method to facilitate sustained dietary change. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: This pilot, randomized, controlled trial evaluated secondary and exploratory outcomes after a dietitian-led telehealth coaching intervention to improve diet quality in people with stage 3-4 CKD. The intervention group received phone calls every 2 weeks for 3 months (with concurrent, tailored text messages for 3 months), followed by 3 months of tailored text messages without telephone coaching, to encourage a diet consistent with CKD guidelines. The control group received usual care for 3 months, followed by nontailored, educational text messages for 3 months. RESULTS: Eighty participants (64% male), aged 62±12 years, were randomized to the intervention or control group. Telehealth coaching was safe, with no adverse events or changes to serum biochemistry at any time point. At 3 months, the telehealth intervention, compared with the control, had no detectable effect on overall diet quality on the Alternative Health Eating Index (3.2 points, 95% confidence interval, -1.3 to 7.7), nor at 6 months (0.5 points, 95% confidence interval, -4.6 to 5.5). There was no change in clinic BP at any time point in any group. There were significant improvements in several exploratory diet and clinical outcomes, including core food group consumption, vegetable servings, fiber intake, and body weight. CONCLUSIONS: Telehealth coaching was safe, but appeared to have no effect on the Alternative Healthy Eating Index or clinic BP. There were clinically significant changes in several exploratory diet and clinical outcomes, which require further investigation. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: Evaluation of Individualized Telehealth Intensive Coaching to Promote Healthy Eating and Lifestyle in CKD (ENTICE-CKD), ACTRN12616001212448.

Aboriginal and Torres Strait Islander people's domains of wellbeing: A comprehensive literature review.

There are significant health and social disparities between the world's Indigenous and non-Indigenous people on factors likely to influence quality of life (QOL) and wellbeing. However, these disparities in wellbeing are not captured in conventional QOL instruments, as they often do not include dimensions that are likely to be relevant to Indigenous people. The objective of this comprehensive literature review was to identify these wellbeing domains for Aboriginal and Torres Strait Islander people in Australia (hereafter, respectfully referred to collectively as Indigenous Australians). We searched PsycINFO, MEDLINE, Econlit, CINAHL, and Embase (from inception to June 2017, and updated in March 2019), and grey literature sources using keywords relating to adult Indigenous Australians' QOL and wellbeing. From 278 full-text articles assessed for eligibility, 95 were included in a thematic analysis. This synthesis revealed nine broad interconnected wellbeing dimensions: autonomy, empowerment and recognition; family and community; culture, spirituality and identity; Country; basic needs; work, roles and responsibilities; education; physical health; and mental health. The findings suggest domains of wellbeing relevant to and valued by Indigenous Australians that may not be included in existing QOL and wellbeing instruments, domains that may be shared with Indigenous populations globally. This indicates the need for a tailored wellbeing instrument that includes factors relevant to Indigenous Australians. Developing such an instrument will ensure meaningful, culturally-relevant measurement of Indigenous Australians' wellbeing.

Transition Between Different Renal Replacement Modalities: Gaps in Knowledge and Care-The Integrated Research Initiative.

Patients with end-stage kidney disease (ESKD) have different options to replace the function of their failing kidneys. The "integrated care" model considers treatment pathways rather than individual renal replacement therapy (RRT) techniques. In such a paradigm, the optimal strategy to plan and enact transitions between the different modalities is very relevant, but so far, only limited data on transitions have been published. Perspectives of patients, caregivers, and health professionals on the process of transitioning are even less well documented. Available literature suggests that poor coordination causes significant morbidity and mortality.This review briefly provides the background, development, and scope of the INTErnational Group Research Assessing Transition Effects in Dialysis (INTEGRATED) initiative. We summarize the literature on the transition between different RRT modalities. Further, we present an international research plan to quantify the epidemiology and to assess the qualitative aspects of transition between different modalities.

Research priorities for childhood chronic conditions: a workshop report.

BACKGROUND: Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy. OBJECTIVE: To identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices. SETTING: An Australian paediatric hospital and health consumer organisations. METHODS: Recruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed. RESULTS: Seventy-eight research questions were identified. Five themes underpinned participants' priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services). CONCLUSION: Research priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.

General practitioners' perspectives on the prevention of cardiovascular disease: systematic review and thematic synthesis of qualitative studies.

OBJECTIVE: Cardiovascular disease (CVD) is a leading cause of morbidity and mortality globally, and prevention of CVD is a public health priority. This paper aims to describe the perspectives of general practitioners (GPs) on the prevention of CVD across different contexts. DESIGN: Systematic review and thematic synthesis of qualitative studies using the Enhancing Transparency of Reporting the Synthesis of Qualitative research (ENTREQ) framework. DATA SOURCES: MEDLINE, Embase, PsycINFO and CINAHL from database inception to April 2018. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: We included qualitative studies on the perspectives of GPs on CVD prevention. DATA EXTRACTION AND SYNTHESIS: We used HyperRESEARCH to code the primary papers and identified themes. RESULTS: We selected 34 studies involving 1223 participants across nine countries. We identified six themes: defining own primary role (duty to prescribe medication, refraining from risking patients' lives, mediating between patients and specialists, delegating responsibility to patients, providing holistic care); trusting external expertise (depending on credible evidence and opinion, entrusting care to other health professionals, integrating into patient context); motivating behavioural change for prevention (highlighting tangible improvements, negotiating patient acceptance, enabling autonomy and empowerment, harnessing the power of fear, disappointment with futility of advice); recognising and accepting patient capacities (ascertaining patient's drive for lifestyle change, conceding to ingrained habits, prioritising urgent comorbidities, tailoring to patient environment and literacy); avoiding overmedicalisation (averting long-term dependence on medications, preventing a false sense of security, minimising stress of sickness) and minimising economic burdens (avoiding unjustified costs to patients, delivering practice within budget, alleviating healthcare expenses). CONCLUSIONS: GPs sought to empower patients to prevent CVD, but consideration of patients' individual factors was challenging. Community-based strategies for assessing CVD risk involving other health professionals, and decision aids that address the individuality of the patient's health and environment, may support GPs in their decisions regarding CVD prevention.

Research priorities in health communication and participation: international survey of consumers and other stakeholders.

OBJECTIVE: To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in 'health communication and participation' (including such concepts as patient experience, shared decision-making and health literacy). SETTING: International. PARTICIPANTS: We included anyone with an interest in health communication and participation. Up to 151 participants (18-80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). DESIGN: Survey. METHODS: We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. RESULTS: Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), 'official' health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals. CONCLUSIONS: Consumers and other stakeholders want research addressing structural and cultural challenges in health services (eg, lack of holistic, patient-centred, culturally safe care) and building health professionals' communication skills. Solutions should be devised in partnership with consumers, and focus on the needs of vulnerable groups.

Children's experiences of congenital heart disease: a systematic review of qualitative studies.

We aimed to describe the experiences of children and adolescents with congenital heart disease (CHD). Electronic databases were searched until August 2016. Qualitative studies of children's perspectives on CHD were included. Data was extracted using thematic synthesis. From 44 studies from 12 countries involving 995 children, we identified 6 themes: disrupting normality (denying the diagnosis, oscillating between sickness and health, destabilizing the family dynamic), powerlessness in deteriorating health (preoccupation with impending mortality, vulnerability to catastrophic complications, exhaustion from medical testing), enduring medical ordeals (traumatized by invasive procedures, disappointed by treatment failure, displaced by transition, valuing empathy and continuity in care, overcoming uncertainty with information), warring with the body (losing stamina, distressing inability to participate in sport, distorted body image, testing the limits), hampering potential and goals (feeling disabled, unfair judgment and exclusion, difficulties with academic achievement, limiting attainment and maintenance of life milestones), and establishing one's own pace (demarcating disease from life, determination to survive, taking limitations in their stride, embracing the positives, finding personal enrichment, relying on social or spiritual support). CONCLUSION: Children with CHD feel vulnerable and burdened by debilitating physical symptoms, unpredictable complications, and discrimination. Clinicians may support patients by sharing recognition of these profound psychosocial consequences. What is Known: • CHD is associated with difficulties in learning and attention, school absenteeism, decreased endurance, poor body image, and peer socialization • What is lesser known is how young patients cope with the symptoms, prognostic uncertainty, and treatment burden What is New: • We found that children are challenged by lifestyle restrictions, fear of invasive procedures, impaired body image, discrimination, and uncertainty about the future. Feelings of disempowerment are intensified by the unpredictability of disease progression • Thus, strategies to improve outcomes include improved patient education on disease and lifestyle management and partnership with school teachers and counselors for unique psychosocial support.

Perspectives on childhood resilience among the Aboriginal community: an interview study.

OBJECTIVE: To describe Aboriginal community members' perspectives on the outcomes and origins of resilience among Aboriginal children. METHODS: Face-to-face interviews were conducted with 36 Aboriginal adults (15 health service professionals, 8 youth workers and 13 community members) at two urban and one regional Aboriginal Community Controlled Health Service in New South Wales. Interviews were transcribed and analysed thematically. RESULTS: We identified six themes: withstanding risk (displaying normative development, possessing inner fortitude); adapting to adversity (necessary endurance, masking inner vulnerabilities); positive social influences (secure family environments, role modelling healthy behaviours and relationships); instilling cultural identity (investing in Aboriginal knowledge, building a strong cultural self-concept); community safeguards (offering strategic sustainable services, holistic support, shared responsibility, providing enriching opportunities); and personal empowerment (awareness of positive pathways, developing self-respect, fostering positive decision making). CONCLUSIONS: Community members believed that resilient Aboriginal children possessed knowledge and self-belief that encouraged positive decision making despite challenging circumstances. A strong sense of cultural identity and safe, stable and supportive family environments were thought to promote resilient behaviours. Implications for public health: Many Aboriginal children continue to face significant adversity. More sustainable, Aboriginal-led programs are needed to augment positive family dynamics, identify at-risk children and provide safeguards during periods of familial adversity.

Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease.

AIM: This study aimed to identify consumer perspectives on topics and outcomes to integrate in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guidelines on autosomal-dominant polycystic kidney disease (ADPKD). METHODS: A workshop involving three concurrent focus groups with 18 consumers (patients with ADPKD (n = 15), caregivers (n = 3)) was convened. Guideline topics, interventions and outcomes were identified, and integrated into guideline development. Thematic analysis was used to analyse the reasons for their choices. RESULTS: Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, fluid intake, physical activity, complementary medicine), pain management and psychosocial care (mental health, counselling, cognitive and behavioural training, education, support groups). They also identified 26 outcomes including quality of life (QoL), progression of kidney disease, kidney function, cyst growth and nephrotoxity. Almost all topics and outcomes suggested were identified by health professionals with the exception of five topics/outcomes. Six themes reflected reasons for their choices: clarifying ambiguities, resolving debilitating pain, concern for family, preparedness for the future, taking control and significance of impact. CONCLUSION: Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of ADPKD, there was also important discordance with consumers focused on fewer issues, but particularly on lifestyle, psychosocial support, pain, and QoL and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient-centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.

Consumer perspectives on pediatric rheumatology care and service delivery: a qualitative study.

OBJECTIVES: This study aimed to elicit parental and adolescent perspectives on pediatric rheumatology care and service delivery and to describe the impact of this process on a proposed model of care addressing pediatric rheumatology service delivery. METHODS: Adolescents with juvenile idiopathic arthritis (JIA) and caregivers in New South Wales, Australia, participated in focus groups or semistructured interviews conducted from August to November 2011. Transcripts were coded and thematically analyzed. Changes to the model of care as a result of this process were identified. RESULTS: Thirty-seven parents and 13 adolescents participated. Five main themes were identified including (1) optimize service efficiency (promoting awareness about JIA, minimizing delays in diagnosis and treatment, continuity of care, holistic and integrated care, access to health care providers with JIA expertise, extending pharmacy services, regional outreach programs); (2) transitional care (trust and rapport with the adult rheumatologist, comprehensive information transfer of patient history); (3) psychosocial support (social and financial aid, mental health services, vocational guidance, peer support); (4) informational needs (medicine adverse effects, nutritional guidance, pain management, administering medications, obtaining medical equipment); and (5) school-based support and advocacy (to promote acceptance, provide academic assistance, facilitate environmental modifications, offer alternative activities). The model of care was extended to include consumer-focused concerns. CONCLUSIONS: A well-coordinated network of services, timely and accurate information about the illness, treatment and support services, adequate pharmacy support, and school-based advocacy are proposed to be needed to ensure pediatric rheumatology services that are accessible and responsive to the needs of patients and their families.

Quality of life of young adults and adolescents with chronic kidney disease.

OBJECTIVE: To elicit utility-based quality of life (QOL) in adolescents and young adults with chronic kidney disease (CKD). STUDY DESIGN: A cross-sectional study was conducted among patients aged 12-25 years with CKD stage 3-5 and 5D from 6 centers in Australia. QOL was measured using a visual analogue scale, and 3 utility-based QOL measures: Health Utilities Index Mark 2 and 3 (HUI2/3), Kidney Disease Quality of Life, incorporating the short form (SF)-12 transformed to SF-6D, and time trade-off (TTO). Multiple linear regression was used to define predictors for TTO QOL weights, SF-6D, and visual analogue scale scores. RESULTS: On a utility scale, with extremes of 0 (death) to 1 (full health), the 27 participants had a mean TTO QOL weight of 0.59 (SD = 0.40), HUI2 of 0.73 (SD = 0.28), HUI3 of 0.74 (SD = 0.26), and SF-6D of 0.70 (SD = 0.14). QOL weights were consistently low across the 4 utility-based instruments with widest variability in TTO responses. Mean QOL weights were higher among predialysis participants. The HUI2 indicated variability in the domain of emotion. From the Kidney Disease Quality of Life measures, decrements were observed in all QOL domains though dialysis patients reported a significantly higher burden attributed to kidney disease. CONCLUSIONS: Adolescent and young adults with CKD report low QOL values. Their utility-based QOL scores imply they are willing to trade considerable life expectancy for perfect health. Holistic care to improve QOL and minimize disease burden are imperative for optimizing health outcomes in young people with CKD, particularly those on dialysis.

The perspectives of adults living with peritoneal dialysis: thematic synthesis of qualitative studies.

BACKGROUND: Most patients with end-stage renal disease require dialysis to survive because they are unable to access kidney transplantation. Peritoneal dialysis (PD) is recommended by some clinical practice guidelines as the dialysis treatment of choice for adults without significant comorbid conditions or those with residual kidney function. This study aims to synthesize published qualitative studies of patients' experiences, beliefs, and attitudes about PD. METHODS: We conducted a systematic review and thematic synthesis of qualitative studies of adult perspectives of living with PD. Databases (MEDLINE, Embase, PsycINFO, and CINAHL), theses, and reference lists were searched to November 2011. RESULTS: 39 studies involving 387 participants were included. We identified 7 themes: resilience and confidence (determination and overcoming vicissitudes), support structures (strong family relationship, peer support, professional dedication, social abandonment, and desire for holistic care), overwhelming responsibility (disruptive intrusion, family burden, and onerous treatment regimen), control (gaining bodily awareness, achieving independence and self-efficacy, and information seeking), freedom (flexibility and autonomy, retaining social functioning, and ability to travel), sick identity (damage to self-esteem and invisible suffering), and disablement (physical incapacitation and social loss and devaluation). CONCLUSIONS: PD can offer patients a sense of control, independence, self-efficacy, and freedom. However, holistic and multidisciplinary care is needed to mitigate the risks of impaired self-esteem, physical incapacitation, reduced social functioning, and poor sense of self-worth. Strategies that aim to strengthen social support and promote resilience and confidence in patients are integral to achieving positive adjustment, improved psychosocial outcomes, and treatment satisfaction.

Adolescent views on transition in diabetes and nephrology.

UNLABELLED: Managing the transition of adolescents from paediatric to adult care is complex and remains an important challenge. This aim of this study was to synthesize studies on perspective on transition to adult care among young people with diabetes or chronic kidney disease. We conducted a systematic review of surveys and qualitative studies that explored adolescent perspectives on transition to adult care in diabetes and chronic kidney disease. Searches were conducted to week 4, June 2010. For quantitative questionnaires, all items were mapped into a domain schema. Thematic synthesis of the qualitative findings was performed. Fourteen studies involving 854 respondents were included. The majority of participants felt somewhat prepared but had reservations about transfer. Five major themes were identified: (1) preparedness (timing of transfer, access to providers, parental involvement), (2) overwhelmed by an impersonal environment in adult service (sterile and unwelcoming, navigating new processes, feeling displaced), (3) independence (developing self-esteem and an adult identity, taking responsibility and ownership), (4) valuing familiarity (building trust, peer support) and (5) service and information needs (leniency, lack of access, efficiency, information needs). CONCLUSION: Holistic and adolescent focussed transition programs are needed which address adolescent needs by providing adequate access to health services, encouraging independence and ownership of health management, promoting trust in providers, giving comprehensive information about what to expect and how to navigate adult services and facilitating interaction with younger patients.